1. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. THE REGISTRY OF THE INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION: NINETEENTH ANNUAL REPORT

2. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. Major Contributors to the ISHLT Transplant Registry Eurotransplant (ET): AustriaNetherlands BelgiumSlovenia Germany United Kingdom Transplant Services Authority (UKTSSA): United KingdomIreland United Network for Organ Sharing (UNOS): United States 75 Individual centers from Canada, Central/South America, Europe, Asia, Australia, and Africa (reporting transplants since 1995)

3. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. ACKNOWLEDGMENTS: We wish to extend our sincere thanks to the many thoracic transplant surgeons, physicians and data coordinators in transplant programs throughout the world whose timely and accurate submission of data has made these analyses possible.

4. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. ISHLT International Heart and Lung Transplant Registry Proposed Mission Statement (8/24/01) The ISHLT International Heart and Lung Transplant Registry was created to advance the state of knowledge and patient care regarding therapies for the failing heart and lung. This mission is accomplished by maintaining a repository of the worldwide thoracic organ transplant experience and by fostering related outcomes research in order to: 1.Create new knowledge related to advanced heart and lung failure and transplantation; 2.Serve as a resource for healthcare providers seeking information regarding patient care;

5. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. ISHLT International Heart and Lung Transplant Registry Proposed Mission Statement (8/24/01) 3. Provide benchmark aggregate date for use by individual centers to assess their center-specific practices and outcomes; 4. Serve as a resource for governmental agencies worldwide when formulating public policy regarding thoracic organ transplantation; 5. Serve as a resource for patient-related organizations and pharmaceutical companies regarding disease-specific therapies and transplant outcomes (contd)

6. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. Goals of New Registry Structure 1.Increase the number of publications/studies using Registry data 2.Increase the number of non-US reporting centers 3.Optimize the data quality and integrity 4.Improve the process of receiving, processing and fulfilling data and analysis requests 5.Develop sources of external funding 6.Develop a formal publication policy regarding the use of Registry data 7.Increase the number of centers reporting data online 8.Redefine and improve the working relationship with UNOS Registry staff

7. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. Goals of New Registry Structure (contd) 9.Optimize the value and image of the Registry to the Society, its members, and the external research community 10.Identify patient-related organizations and pharmaceutical companies and make them aware of the Registry as a resource 11.Restructure the data fields into a tiered system and increased the number of required fields 12.Increase the number of reporting agreements with non- US government regulatory agencies (i.e, Swiss Transplant, France Transplant, Scandia Transplant, etc.)

8. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. REGISTRY STEERING COMMITTEE Marshall Hertz – Medical Director Elbert Trulock – Associate Director for Lung Transplantation David O. Taylor – Associate Director for Heart Transplantation Mark Boucek – Associate Director for Pediatric Transplantation Paul Mohacsi – Associate Director for Non-US Centers Amanda Rowe – ISHLT Executive Director Berkeley Keck – Associate Director for Database Management Leah Bennett Edwards – Associate Director for Data Analysis

9. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. General Registry Statistics

10. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. REGISTRY DATABASE: Number of Transplants Performed ORGANTransplants Reported Through 2001 Heart61533 Heart-Lung2935 Lung14588

11. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. REGISTRY DATABASE: Number of Centers Reporting Transplants Organ Ever Reported Data Centers Reporting Transplants in 1993 Centers Reporting Transplants in 2001 Centers with Continuous reporting through 2001 % of 2001 centers that are continuous reporters Heart32823020018391.5 Heart- Lung 12860351542.9 Lung181102998282.8

12. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. REGISTRY DATABASE: Number of Centers Reporting Heart Transplants * Numbers may be low due to delayed reporting

13. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. REGISTRY DATABASE: Number of Centers Reporting Lung Transplants * Numbers may be low due to delayed reporting

14. 2002 ISHLT J Heart Lung Transplant 2002; 21: 950-970. REGISTRY DATABASE: Number of Centers Reporting Heart-Lung Transplants * Numbers may be low due to delayed reporting